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Post Info TOPIC: Telling others...
Corvette Man


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RE: Telling others...
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Bills,

Thanks. I appreciate you sharing about the colorful past. At first my biggest fear was  being outed about my past. At some point it became more important to help others than guard my past. This, Hep C, is just too new to me. Looks like you live by the water. Wish I were in a warmer place. I am a missionary and currently serving in North Dakota. Its -16 degrees here. Lots of snow. Several years ago I dedicated my life to working with homeless and addicted people. I used to be homeless. There is some homelessness here but not much. Lots of alcoholism amd drug addiction. Im not sure how long God will have us here. Having a very hard time understanding why God would allow this after I have worked so hard for Him for so long.



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Bills


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Corvette Man

You have a colorful past. So do I  That last line keep your mouth shut  good one  ( tough love )  I agree you dont have to tell anyone. Try not to sweat it  Most people when arrested start explaining and dig a deeper hole exercise your right to remain silent  You can get this off your chest here.   Your health is more important than anything  It is scary very scary  With all the overcoming I see here you have a great track record  I know you can do this. Many here have been there I have too. I wish I knew about this forum several years ago It would have saved me a ton of sleepless nights your going to be OK  



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Bills

Harvoni started 12-12-14 for 24 wks PrevTX Geno 1 stage 3 cirrhosis - non resp Int/ ribv. Started Trial  in Aug 2011 -July 2012 into Incivek relapsed  Feb 2013 Had 72 weeks on interferon & Riba.

Corvette Man


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To all of you:

I  am so appreciative of all the good advice. I know some of you sincerely desire to educate others and relieve the stigma associated with Hep C. I wish I were strong enough to take this cause on. I am not able to at this time. I am still in shock and still filled with immense fear and sadness. I have had many a stigma to overcome. "alcoholism and drug addiction 20years clean and sober", "child abuse survivor", "ex-felon / re-entry into society", I earned a B.S. in business and graduated with honors in spite of having a learning disability that made me quit school after 9th grade. In short, I have lived a very hard life filled with many obstacles to overcome and I am absolutely wore out. I just got to a point where I can earn a living and now "This, Hep C"? Really? Talk about a faith shaker. Please bear with me. The day may come when I can be more open with this, but not yet. I am thankful that there are people who are strong enough to carry the banner for this cause. 'As for me: I am still trying to figure things out like 1. What is Dragon poison? 2. What is fire in the hole?

I hope a do not seem petty or little because of my selfish fear. So far, you guys are the only ones besides my wife that knows. Its lonely.

Vette Man



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JIme


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As my Irish grandmother would say.....weesh to ya. Which means keep your mouth shut.....lol  It's nobody's business but yours. You know you can't give it to anyone unless it's blood to blood so I wouldn't worry about it.

On a lighter note, I've wanted to fire myself many times but I was never successful.



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jim

GT1a, St2 Lv2 last biopsy 2002, VL  11.4m,  start triple tx 9/30/11

VL 470 @4wks.....VL 22,000 @8wks  stopped tx

Round 2-  Started 3/16/12   PSI-7977, BMS-790052, Riba Undetectable day 14

Did 24 weeks Still UND 12 weeks post tx, SVR24!!!!!!! 2/14/13

 

 

 

 

 
Corvette Man


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Iris,

Thanks. Being the business owner, I would have to fire myself. I do have to worry about my clients firing me. Could be catastrophic.

Vette Man



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Northern


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Yes I am. Since 2004. I worked construction for 20 years before that. This is my 3rd time around on treatment and I'm at a point in my life where don't care who knows. This was done to me and I didn't do it myself. I rather be up front about it then deal with the whispers around the corners. I have never been this anemic before and it shows including performance. If it wasn't for my need to pay bills I would sit it out till the Incivek was done. I'm thinking the anemia will get better afterwards.

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1b, 3rd time around on treatment. Stage IV cirr. Undetectable at 8 weeks with Incviek. Been infected since the late 70s. 48wk treatment completed. Sustained undetectable. 
Corvette Man


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Nothern,

Are you a nurse? I appreciate your honesty with your trusted co-workers. As a haircutter, I am rarely with people I know well enough to trust and Oh how people like to gossip in small communities. It would destroy my business and the only way I have to support my family. I wish I did not have to deal with this. I can even begin to tell you how bad this hurts. I wish I could be more open. I feel like the worst minister ever. I am ashamed. The thing is, I have to take my wife and her security to heart. I have shed many a tear over this.



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Northern


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I have not kept it a secret at work. Especially since I work with a bunch a nurses. I walk into the report room and the first thing out of their mouths, Are you okay? You look so pale. Hard to hide things from them the shortness of breath is also hard to hide. I've been very lucky to have a very supportive crew to work with. I tell them I don't have a problem with chewing gum and walking but breathing and walking is a different story.

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1b, 3rd time around on treatment. Stage IV cirr. Undetectable at 8 weeks with Incviek. Been infected since the late 70s. 48wk treatment completed. Sustained undetectable. 
Bills


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At the Christmas party yesterday  (  someone I didnt tell  ) pulled me away and looking in my eyes asked So how are you?  going to be ok?  It really touched me as I dont have regular interaction with him. Some people genuinely care and they stand out. Other people dont know what to say and are afraid of saying the wrong thing so they don't. I dont think worst of them I understand that. Ill let them talk if they want to on their time. But in all cases I answer very little. I just accept their concerns tell them Im fine and change the subject. I can't imagine getting into the fire in the hole and rashes and I don't want to preach how terriable this is. Sympathyty is the last thing I want from them. 



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Bills

Harvoni started 12-12-14 for 24 wks PrevTX Geno 1 stage 3 cirrhosis - non resp Int/ ribv. Started Trial  in Aug 2011 -July 2012 into Incivek relapsed  Feb 2013 Had 72 weeks on interferon & Riba.

Cinnamon Girl


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Hi Jim, I don`t see why not and maybe the best way to approach it would be for you or someone else to start a `recovery room` type thread, maybe in the members only `Between Ourselves` section or here in `General Discussion`.   How does that sound?  ~ Jill



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
JIme


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I hear you Phil. In that setting I'm very open about it but not at work. 

I think we need a "room" on this site. This place seems to be crawling with people like us. What do the moderators think of that idea? 



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jim

GT1a, St2 Lv2 last biopsy 2002, VL  11.4m,  start triple tx 9/30/11

VL 470 @4wks.....VL 22,000 @8wks  stopped tx

Round 2-  Started 3/16/12   PSI-7977, BMS-790052, Riba Undetectable day 14

Did 24 weeks Still UND 12 weeks post tx, SVR24!!!!!!! 2/14/13

 

 

 

 

 
Phil G


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I told no one at work. I told my immediate family (wife and kids). They needed to know as there was a chance I had infected them, and they would have noticed anyway. And I told virtually all of my friends. Note though that most of my friends are in the rooms of recovery. A fair number of those would respond "Me too".

 



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Geno 1A, VL 1.9 mm, SOT 12/2/11 - Pegintron/Ribavirin/Victrelis, UND since wk 8, EOT 6/15/12 (28 wks), SVR 11/30/12
JIme


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If my job required me to touch people, I would tell no one. I told one person I had to deal with at work because I was acting like a nut job, a few close friends, and my family. That was it. Be careful who you tell. Especially at work.

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jim

GT1a, St2 Lv2 last biopsy 2002, VL  11.4m,  start triple tx 9/30/11

VL 470 @4wks.....VL 22,000 @8wks  stopped tx

Round 2-  Started 3/16/12   PSI-7977, BMS-790052, Riba Undetectable day 14

Did 24 weeks Still UND 12 weeks post tx, SVR24!!!!!!! 2/14/13

 

 

 

 

 
news


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I pretty much told everybody, and some of the reactions were a little ignorant. But the vast majority were very understanding, and I could tell the people knew somethng about the virus and how it can be spread. They weren't afraid of me and were very helpful on my bad days. But this would not be right for everybody. I was lucky to have such good friends and family.

Alan



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Geno 1A  Started Pegasys/Ribavirin/Incivek Nov. 20, 2011 .  Completed July 28, 2012 (36 weeks). For a treatment history, see:  https://jshare.johnshopkins.edu/xythoswfs/webview/_xy-9921874_1

SVR on January 14, 2013!!
marktrux


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Telling other is a very personal decision to make. When I first found out(1994) I only told my now-wife and very close family. But over time word spreads, and now pretty much everyone I'm close to knows. I dont try to hide it now, no shame here, but I dont brag about it either. Through the years i've come to find that a lot of the people i know, either have or know some one else who has hep c, unfortunally we're not in a very exclusive club. My wife's sister and mother are also married to men with hep c, so i'm guessing there are a bunch of us out there.



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KCCO

 

 
davesf


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People who are ignorant (meaning they just don't possess knowledge as opposed to being stupid) fear the Hepatitus word.  They may be vaguely aware that there are different types but they don't know that they're unrelated or what the differences are.  Mainly it's about contagion.  So you can either educate them or not tell them.  Some people are not worth the effort to educate.  For those, if you need to share anything, tell them liver disease.  Avoid the words hepatitus and virus.



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All Done Poisoning the Dragon that Used to Poison Me

Genotype 1b  Incivek Combo
Bills


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Got pos blood result for hep C in 2002 I kept the secret for about 6 years  only direct family Then 2008 sought treatment a few more were told

My 3 rd treatment July 2012 I had to tell a few people at work  I have a problem and needed to to take leave  I only said Cirrhosis and liver damage  The words hep c never came out there except to my cousin His wife is a Trauma RN    I was a very hard thing to talk about with my co workers, supervisors, HR and owners of the company  etc

Since I let 60% of the truth out  I figure wait and see how the news spreads It did but I don't care anymore I don't say Hep C just liver disease and cirrhosis It's up to them to figure it out  If they don't understand and want to run go ahead. I can't run from this virus so I won't chase them. It is reliving to not be hiding and making excuses anymore      I can tell who is sincerely concerned about how I'm doing from the nosey ones all that matters now is staying UND

I have the people I trust and care  and I have this forum  I'v had a change of attitude    I'll " TRY"  to be happy and content what ever happens. I don't need or want the negitive people running my life with whispers and looking at me It sheds light on them for what they are. I 'm hopeful to stay UND  later to ones who run are nosey or gossip they are only in my way.

 i'm not adviseing anyone to tell just telling my story as it applied to me



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Bills

Harvoni started 12-12-14 for 24 wks PrevTX Geno 1 stage 3 cirrhosis - non resp Int/ ribv. Started Trial  in Aug 2011 -July 2012 into Incivek relapsed  Feb 2013 Had 72 weeks on interferon & Riba.

gatekeep


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The people I trust I tell a bit more. But for the most part,in the beginning I just told people like coworkers and brofriends I have had liver decease for a long time and I'm on heavy Tx. Seems once you say the Hep word it's a different ball game in my opinion.

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25 yrs HepC. type 1a geno. 6mill viral load,3.5 out of a 4 liver biop.started Sept.19, 2012,Tx.Rib.,Incivek, Peg,4wk. Vl 61,undetected @12 wks,undetec.Wk 24
zuzusfam


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I don't think you need to tell clients about HCV. I told a lot of people. HCV and treatment need to come out of the closet and get rid of the stigma of being a "bad" thing. If people ask me how I got it, I tell them "bad choices when I was younger" or "I don't know." (Depends on how well I know the person.)Like Jill, when I tell people about HCV and the treatment that I am undergoing, they are very understanding and do not run away from me screaming.

Vette Man: Tell the nuns in confidence. They will not share but could be a great support system for you.

Just my opinions. smile



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53 y.o. female, diagnosed in 1998. Started tx Oct 8th 2012. Genotype 1a. VL 600,000 before treatment; VL 98 11/12; UND 12/12. Reduced interferon to 135mcg 12/12. 12/17/12 stopped incivek due to rash. 12/20/12 Stopped all meds due to sx
Corvette Man


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Thank you for the insite everyone. This is extremely difficult for me. I have two nurses in my church that have been asking very direct questions. Although liver cancer sounds scary, it explains the chemotherapy and the side effects. I wish people were not so judgemental and ignorant. I really do not know the people well enough to decide I can trust them yet. I know I will have to figure this out but I was hoping someone had a good explaination that would not make people feel like I have HIV or the plague.

I am so happy however that I have found a group of people that I can, "just be me" with. Thank you for that.

Vette Man



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LUV2RYDE


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I went through the same thing. I told a select few in my family. I didn't tell my son because of his ignorant wife(didnt want to risk not seeing granddaughter) and didn't tell my two best friends. There seems to be more sympathy if it is some kind of cancer then HCV. Best of luck my friend. smile



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Geno type 1A Started Abbott clinical trial mid Jan 2013. :-)

Viral load when I started this trial 4.75million  Went 12wks on placebo and started real meds on 4/5/13 after 1wk  on real meds 25 after UND @3wks,6wks.w00t: Done trial 6/27/13 and still UND.

 
Bouba


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Sensitive point. All of my friends (incl some close collegues) are aware am on  HCV tx. Am still going to the office every day, a bit relaxed schedule due to X'mas lull soon.

You are right, many are ignorant and there is no need for them even to be aware. Ignorance creates monsters.

For the rest, who notice I am pale, fatigue, not sharp on schedule, but with whom I do not want to share, - I just undergo gastroentherological medication course. Period. Enough to explain.

 

 

 



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58 yo male, HCV since 1981. Gen 1B (IL28B, CT). Diagnosed 1999,  VL before tx 100'000. Biopsy A2, F3 fibrosis. Naive, SOT (with Incivek) Oct 26, 2012. UND @ week 4, 12, 18, 24, UND 12 and 24 weeks post-RX
Cinnamon Girl


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Hi Robert, as Iris said this has been discussed many times before and you`ll find that most of us have had to decide on the best way forward with this issue at some point, especially where work is concerned.  I would beware of telling anyone you have liver cancer though as that could sound very scary, although some people do say they`re having a course of chemo and that`s often enough to satisfy people like work colleagues without having to go into any more detals. 

Personally I only told a few close friends and family before and during tx, although it was much easier for me because I wan`t working.  But after it was all over I was so relieved to have cleared the virus that I did tell a lot more people and was pleasantly surprised at how well they took it on board. 

Best of luck, I`m sure you`ll have plenty more replies,  Jill xx

 

Ps - I`m moving this thread to the General Discussion section.

 

 

 



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Corvette Man


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Hi Gang,

I am really having a hard time telling others what is going on with me. I am afraid I will scare people away by telling the truth. I dont want people to think I do not trust them as friends. I would almost rather people think I have liver cancer which would explain the chemo therapy. Since my job requires me to touch people, it could negatively affect my only income. I will not be having sex with them or sharing needles so they are safe, but people are really paranoid and ignorant. I am very confused about what to do with this. I think this is my first problem to solve so I will be able to keep an income and a support network.



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Iris Dragonfly


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Hi Robert, This a topic that comes up frequently, and basically it boils down to, tell who you can,( that is ...who you know your secret will be safe with) but that might not be everyone. I don't think you have to tell everyone at work, save for maybe a supervisor, so they know what they can, and maybe won't be able to expect of you. It would be against the law for them to fire you. If you think you are in danger of that...then I wouldn't say anything. Or if they did fire you...you might be able to sue the pants off of em! See how things progress before you blurt anything out. Best wishes dear, Iris



-- Edited by Iris Dragonfly on Thursday 6th of December 2012 03:31:59 PM

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in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)
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